Emotional Wellbeing in Parents of Children on Home Parenteral Nutrition

Abstract

Objectives: Caring for a child on home parenteral nutrition (HPN) is stressful, and its emotional impact not fully appreciated. This study explored the emotional wellbeing and coping styles of parents and children on HPN. Methods: Questionnaire data were collected for parents of children (0–18 years) on HPN. Children 8 years and older completed the revised children's anxiety and depression scale. Parents completed the Hospital Anxiety and Depression Scale, Paediatric Inventory for Parents (PIP) and brief COPE. Results: A total of 14 children were included, 20 parents (13 females) and 4 children completed the survey. Parents had mean PIP difficulty and frequency score of 117.9 and 124, respectively, higher compared to parents of children with other chronic illness. PIP scores were significantly higher where children were also enterally tube fed (P < 0.05). Thirty-five per cent parents scored above clinical threshold on anxiety subscale of Hospital Anxiety and Depression Scale and 30% in borderline range. On depression subscale 15% scored above clinical threshold range and 15% in borderline range. Mean anxiety and depression scores in parents of children with short bowel syndrome (11.8, 7.8) were significantly higher than those with neuromuscular disease (5.8, 1.6) P < 0.05. Coping styles differed according to health condition and whether child was enterally fed. Conclusions: There is a significant emotional impact of caring for a child on HPN, assessment and treatment of anxiety, depression, and stress should be a routine part of care. Individual needs of the child and parent need to be taken into account in providing the most appropriate psychological support.

Nutrition and Intestinal Rehabilitation of Children With Short Bowel Syndrome: A Position Paper of the ESPGHAN Committee on Nutrition. Part 2: Long-Term Follow-Up on Home Parenteral Nutrition

“…Parents’ personal lives are inevitably impacted by the need to deal with venous access, nutritional devices, and life‐threatening complications such as septicemic episodes, fluid, and electrolyte imbalance (44,45). Patients and caregivers may be affected by depression as an emotional response to the diagnosis, followed by anxiety and fear of the unknown, may lose their jobs, their independence, and social life (46,47). The affected child may be aware of limitations, such as fewer opportunities to enjoy the same life as their peers (48,49).…”

Crossing the line? Ethics of parenteral nutrition in paediatric neurodisability complicated by intestinal failure

“…Adding LTPN to the daily care for their child with disability, particularly in the context of inadequate resources and support, may be seen as an intolerable burden for the parents. In children with intestinal failure alone, LTPN at home is known to be associated with decreased parental quality of life 17 18. Some clinicians may seek to ‘protect’ the parents of children with SNI from yet another care they may feel obliged to perform, even when as well informed as possible about what PN would involve.…”

Parent‐child interaction is related to emotional and behavioral problems in pediatric intestinal failure

“…9 Central venous lines and enterostomies can limit the parents' ability tocuddle with their child 10 and diminished feeding options can disturb their relationship. 11 Parents can feel withdrawn from their child due to feeling incompetent or overwhelmed by the medical demands, 12 experience more depressive symptoms and fatigue [13][14][15] and can feel guilty or distressed. 13 Children with IF can become psychologically distressed as their parents are both caregivers and healthcare providers.…”